A miracle baby celebrates her first birthday and defies doctors – after her mother was told she probably wouldn’t survive.
Samantha Perryman was 24 weeks pregnant when her unborn baby was diagnosed with an incredibly rare form of spina bifida.
Called rachischisis, it means that the baby’s spine and spinal cord do not develop properly in the uterus, creating an opening.
Samantha, 29, and partner Stephen Graham, 52, were suddenly faced with the decision that all parents-to-be feared to decide whether to terminate the pregnancy.
When Samantha investigated the condition, she found only one survivor, a young boy living in Asia.
But despite this, and against doctors’ expectations, the couple from Craghead, near Stanley, County Durham, chose to go through with the pregnancy.
Now it’s a year later and baby Leona-Grace is celebrating her first birthday surrounded by her family, who are overjoyed at the miracle baby’s fight for survival.
After birth, Leona-Grace was also diagnosed with ductus arteriosus (PDA) – a medical condition in which the blood vessel connecting the pulmonary artery to the aorta remains open after birth.
It made breathing more difficult for Leona-Grace, who is still oxygen dependent 24/7.
She was also born with scoliosis, in which the spine twists and curves to the side, missing four ribs on the right and two fused together on the left.
Samantha said this means that Leona-Grace’s lungs could bleed at any time and come through her rib, causing her to lose oxygen and die.
“It’s a constant concern,” said Samantha.
“It can happen very quickly and we can’t do anything about it.
“Hopefully it will not come to that. We are a year later and she is still fine. “
During the 20-week gender scan, the couple discovered that there were serious complications with Leona-Grace
Samantha, mother to Ella-Louise, six, and Rosie-Leigh, five, were transferred to North Durham University Hospital, where the developing baby was confirmed to have spina bifida.
A subsequent scan at the Royal Victoria Infirmary in Newcastle a few weeks later told them that their daughter might only live for a few minutes, if she even survived the birth.
Leona-Grace was eventually born via Caesarean section and received special care from birth, while her family waited to see if she would respond to treatment.
On December 20, just over a month after Leona Grace was born, Samantha and Stephen were allowed to take their daughter home.
The first surgery baby Leona-Grace underwent was spinal surgery, while the second was to place shunts in her head to reduce the fluid build-up in the brain after she developed hydrocephalus.
She has now been diagnosed with Chiari malformation, in which the lower part of the brain pushes down into the spinal canal and may require surgery on her hip and spine.
Samantha said, “She doesn’t walk or crawl, and she’s not expected to do those things, she doesn’t play with toys and she’s only managed to roll over once or twice because of a paralyzed leg.
‘But she’s still fighting and you wouldn’t think there was anything wrong with her, she’s so content, always smiling.
Her birthday should be a happy day, but it’s emotional at the same time.
You always wonder, what if we had passed the termination, but now we know it took her a year, and hopefully many more.
“Looking back on last year, we didn’t think we would have this.
“We definitely made the right decision, we wish it would be better for her, and we didn’t have these constant worries.”